Haven at twilight of life

Mary Schumacher, CEO of Hospice NZ, wanted to make a difference. Photo / Mark Mitchell

If you live long enough, you are likely to find yourself in the care of a hospice worker during the twilight of your life.

These professionals provide palliative care for the dying and support for family and loved ones during the most difficult of times.

Mary Schumacher has been chief executive of Hospice New Zealand since 2006 and was CEO at Mary Potter Hospice for 10 years. She said that since her school days at New Plymouth, she always wanted to do social work. She began by working with young people at Catholic Social Services.

"Coming from a fairly strong Catholic family, I think what attracted me was the social justice aspect of it," Schumacher says. "The key thing is about being involved and making a difference. I always thought I would do that in some capacity."

With a Masters in Social Work, she now runs the organisation which provides care and support for more than 13,000 people annually. Hospice New Zealand provides this service free of charge to people with a life-limiting illness, whether they are at home or in a community centre. But Schumacher wants to do more.

"What we recognise is that hospice can't care for every person who needs palliative care. So we're really broadening our approach. We're saying we'll provide the specialist aspect of the service but we can't do it all.

"We need to now be working far more closely with our colleagues in aged care, primary care and other specialist services and hospitals."

Schumacher's goal is that no matter where someone is they can receive palliative care. Hospice is funded partially by the Government and partially through community donations. Volunteerism is also a huge part of hospice, with more than 7000 people giving more than 480,000 hours of their time in various roles throughout the country last year.

"[Volunteer work is] huge in terms of what they do but it's also about what they bring. That's a very special part of the work that we do really."

As CEO, Schumacher administers support to all hospices in New Zealand with the goal of making sure everyone has free care and support at the end of their lives.

"We do palliative care but also the whole philosophy around hospice is to care for people who are dying. We also care for their wider family and whanau."

Schumacher says hospice doesn't just focus on illness - they focus on the person as a whole. "It's looking at the spiritual, psycho-social and all aspects of their life."

Schumacher has also been on the receiving end of hospice care and knows first-hand how important the service is.

"My father died of cancer three years ago in a hospice in Taranaki. He lived at home while he was supported by his local GP and then spent the last three days of his life in hospice. Our family were really pleased with the service that we received and that Dad received."

Schumacher's son battled cancer at the age of 18 and won. But the process of surgery and chemo gave her a renewed respect for what happens on the front lines of healthcare.

"It's been really helpful for my work in that I now have such a far greater appreciation and understanding of what people have been through before they get to our service."

Her experience with hospice allows her to not be as worried if things don't always turn out for the best. She says it's important for New Zealand to learn more about hospice and have discussions about death and dying.

"What is it that people want? What are their expectations around their own death and dying and what's important to them?"

Schumacher says it's understandable that people don't want to discuss these issues but says it's important that when the time comes people have some say in the way they're cared for.

"Remember that palliative care isn't just for older people. It's for anyone who needs it and that's right through for young people as well. So we're really trying to start that dialogue."

Schumacher has had to deal with the deaths of several people close to her. As a Christian, she believes people go on to a better place but she still grieves the loss.

"When its young people and children then I think that's really different and hard thing for people to come to terms with."

Grief is one of those life processes which takes time and there is no right or wrong way to deal with it, she says.

"You come in and out of it and you think you're managing quite well and then all of a sudden something reminds you and you're back into it."

WORKING IN A HOSPICE

It's not surprising that hospice work is a challenging, demanding and sometimes stressful career.

Caregivers need to be emotionally available and authentic but also remember their role.

"I think having empathy and caring but also recognising that it's not your process. It's not you or your family. It's actually somebody else's.

"It's about remaining professional and caring but having some boundaries because you may well become quite attached to people but the next day there is a new patient needing services as well."

Hospice workers should be warm and open but also have self-care skills to recognise when they're getting over-involved.

"Remember what your role is and why you're there. Recognise that there's a whole team and you only play one part of that team. There is a whole team of volunteers, doctors, nurses, social workers, counsellors, occupational therapists, physios, cleaners and so on."

Like any health services role, hospice workers are in high demand. "You need to be a registered and qualified health professional and hospices are always employing staff.

"The average age of nurses is in the early 50s. We've got some serious demand issues looking forward."

Traditionally, hospice has required its workers to have a certain amount of post-graduate experience but is now more flexible and takes on people who are fresh out of school. A history of volunteer work for hospice is also an advantage for candidates.

"We tend to look for people who have had a little bit of experience and clearly they need to be reasonably mature to manage the nature of the work."

Hospice workers are also encouraged to pick up post-graduate courses in their specialty area of interest.

It's important to realise that most hospice patients are, in fact, at home. At any one time in New Zealand there are about 10 or 15 people in the in-patient service. So most hospice work takes place in someone's home and people seeking a career in the industry need to be comfortable with that.

"The whole focus is the people. It's a support package for families so they can help them focus on making the most out of life and the quality of life. And that's what the goal really is ... to keep people as comfortable as we possibly can and to allow them to determine how they want to spend that time."

Hospice nurses administer pain relief that has been prescribed by a doctor.

Dealing with people in pain can be emotional but being there for people in need can lead to a fulfilling career. "

It's a great opportunity to make a difference in people's lives."

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